Encouraging My Spinal Cord Injured Peers To Attend My Peer Support Group

The phrase 'peer support group' evokes many different meanings for any individual. What does it mean to be supported by your peers in a group setting? Do I need to share personal struggles and challenges with a group of strangers? How could these strangers understand me even if these strangers do have a spinal cord injury just like I do? Countless thoughts and emotions similar to these occur after someone has a spinal cord injury and is invited to a peer support group. A spinal cord injury happens in an instant. No one expects to be paralyzed or is prepared for losing control of their body. Losing control of your body's previously normal abilities like the ability to walk is what the outside world perceives to be the worst. But, many paralyzed individuals will state that a secondary condition like controlling your bladder is more difficult to manage and deal with than learning how to use a wheelchair. So... what does that have to do with peer support groups?

A spinal cord injury peer support group is designed to enable individuals with spinal cord injuries to learn from each other about managing your life after a life altering spinal cord injury. Doctors, nurses, therapists, family members, friends and many others want to help you overcome and move forward after your newly acquired disability; yet, firsthand knowledge from a person living with paralysis for a long time can be better information than you receive from your doctor. Unfortunately, many individuals will not ask for help even if they desperately need it. The vast amount of information related to your newly acquired paralysis is overwhelming. How can I have a life after paralysis if I can't even stop peeing on myself while I'm in my wheelchair? My doctors have never had an accident in their pants because of paralysis, but I have. I can empathize with paralyzed individuals that are going through difficult personal struggles without having much knowledge related to their condition because I was there six years ago. There can be many overwhelming hurdles to jump whether that challenge is managing your health, transportation, accessible housing, financial challenges and a host of other problems. Meanwhile, I or someone in a similar situation may have a solution or recommendation to help with these problems. I steadfastly believe that having a support system to help you is crucial to you maximizing your independence.

Fortunately, I was thrown into a situation with a lot of support especially from my family. Support does not mean that they did everything for me like a personal butler (even though that sounds nice in theory). Sometimes support consisted of pushing me out of my comfort zone by family members like my dad. I will never forget the day that I was lovingly forced to sign up for college classes by my father a few short months after I arrived home from the hospital. How was I going to complete a college course when I had limited hand and arm functioning from my quadriplegia? Well, I figured it out and school became the least of my concerns.

 

 I believe that I have acclimated to my paralysis quicker than most individuals because I have had a support system and sense of independence. In addition, I learned various tips and valuable information from several quadriplegics that had been around the block. I used their information to implement solutions into my life to enable me to accomplish seemingly impossible tasks or speed up how quickly I could do a task in my daily life. For example, I was informed by one quad about a particular catheter, the EZ Gripper, that enabled me to create a system with hooks to remove my pants so I could independently intermittent catheter myself anywhere. Being able to be independent intermittent catheter myself without assistance was my biggest accomplishment in my first year of paralysis. This independence allowed me the freedom and peace of mind to not have to rely on others to follow me around just to catheter me. Personally, I loathed but appreciated having family members hovering around me trying to 'help'. Accepting this help from others was difficult for me at first because I was conscientiously admitting that I could not do the task at hand. I realized that I needed help. I just wanted to try to do as much as I could.

I wanted to maximize my independence. I continuously attempted to figure out how to use some inanimate object like using a fork to eat without spilling food all over myself. Basically, I struggled a lot usually alone in my room. From one quad, I learned about an adapted fork for eating. This adapted fork had a C shaped design to slide my hand into. This fork enabled me to (most of the time) not spill food all over myself. Plus, the fork had other uses. I experimented by using this fork for a variety of tasks including eating, cooking, opening zippers and even opening letters and packages. Then, I will began driving after a few years, which allowed me to do even more. Some people are amazed that I can drive at all. I have experienced a lot of situations similar to these personal anecdotes. I know many other paralyzed individuals that have similar stories to share, which could help others with paralysis potentially minimize potential pitfalls as they are adapting to their new life. These anecdotes explain what peer support groups are about. I hope this article inspires paralyzed individuals reading this to maximize their potential and their life! Carpe Diem!

http://www.wheel-life.org/comfort-conversations-finding-encouragement-peer-support-groups/

 

Proof that you should never give up on your dreams!

“After I lost my hearing, I gave up,” she said. “But I want to do more with my life than just give up.” 

 

Deaf singer follows her dreams and earns a Golden Buzzer from Simon Cowell with her original song 

Check out Mandy Harvey's Personal page to learn more about her music and personal struggle accepting her disability and the ways she broke through her everyday barriers in persuit to reaching her dream.

New CEO & Participation at the Mercedes-Benz Corporate Run

CILSF Window Sign Outside the Office

Miami, FL 4/27/17 The Center for Independent Living of South Florida, Inc. (CILSF) is excited to announce its recent hire CEO Peter O’Connell. Mr. O’Connell originally hails from California and the heart of the Disability Rights Movement. His resume includes stops at the University of California of Berkeley and Center for Independent in Berkeley both original and to this day cutting edge institutions of the Independent Living Movement. We are excited that Mr. O’Connell’s is joining the agency and excited to see CILSF’s great future. CILSF would like to invite the community to join the agency at the Mercedes-Benz Corporate run to meet our new CEO and join the agency in promoting independent living for persons with disabilities in the community. CILSF consumers, staff, and board members will be running, walking and rolling to show that with the right skills anyone who wants to can live independently. CILSF is dedicated to teaching persons with disabilities how to improve and maintain independent lives in the community through peer education.

Visit the CILSF booth at the corporate run and enter to win a free to enter iPad. The table is located just south of the Bayfront Park Amphitheatre.  The run on April 27th, 2017 Miami Corporate run will begin at 6:45 PM at the Bayfront Park. The route begins on Biscayne Blvd & SE 1st street, winds through downtown and finally ends on Biscayne Blvd & NE 3rd Street. Parking will be incredibly impacted for the event and people are encouraged to use the MetroMover if at all possible and exit at the Bayfront Park station.

Our goal is to ensure that every person with a disability has all the skills and resources necessary to live independent and integrated lives within the community.

In 2016, CILSF served over 1,500 persons with disabilities in the community. In Miami-Dade County there are over 250,000 individuals with a significant disability. Our goal is to ensure that every person with a disability has all the skills and resources necessary to live independent and integrated lives within the community. We hope that you will join us the corporate run and help spread the word.

About the Center for Independent Living of South Florida, Inc.

Juan teaches a class in ASL

The Center for Independent Living of South Florida, Inc. is registered non-profit 501(c)3 corporation. At CILSF a majority or our staff, management, and Board of Directors are persons with disabilities. CILSF was founded in 1993 to help meet the tremendous needs of the disability community following Hurricane Andrew. Since then, we have grown to provide a variety of services and supports to the disability community in Miami-Dade County ranging from housing assistance, benefits assistance, job skills training, independent living skills training, youth transitions, Deaf education, ASL interpreting and many more.

Federal Judge Extends Florida Voter Registration

A federal court has extended Florida’s voter registration deadline from Tuesday to 5 p.m. ET Wednesday due to Hurricane Matthew’s interruption of last-minute sign-ups.

The US District Court ruling comes after the Florida Democratic Party sued, seeking an additional week due to the “strong likelihood” many of the state’s voters would be “severely burdened” by the hurricane’s fallout in the upcoming election.

Florida Republican Gov. Rick Scott had opposed the extension, saying last week that “people have had time to register.”

In court papers, Marc Elias, who serves at the general counsel for Hillary Clinton’s campaign, argued that Scott “unambiguously ordered” Florida citizens to evacuate, and now some voters have been prevented from being able to register which might decrease “the overall likelihood” that the party will be successful in helping to elect Democrats.

Judge Mark E. Walker set a Wednesday hearing on whether to further extend the deadline beyond Wednesday.

“It has been suggested that the issue of extending the voter registration deadline is about politics. Poppycock,” Walker wrote. “This case is about the right of aspiring eligible voters to register and to have their votes counted. Nothing could be more fundamental to our democracy.”

Hurricane Matthew struck the southeastern United States, hitting two states, Florida and North Carolina, that are crucial to determining the outcome of this year’s presidential race.

“Hurricane Matthew not only forced many of those voters to evacuate the state, but also foreclosed the only methods of registering to vote: in person or by mail,” Walker wrote. “Because those aspiring eligible voters could not register, they could not vote in the upcoming election. As a result, Florida’s statutory framework completely disenfranchises thousands of voters, and amounts to a severe burden on the right to vote.”